“Unlimited, Together we’re unlimited, Together we’ll be the greatest team there’s ever been”…from the play Wicked

My rock star hubby has been the best cheerleader this week. He has never stopped researching, never stopped asking questions, and never given up hope! We started at UCLA on last Monday to begin or should I say expedite the trial process. I did all the tests.  Even though the paper pusher felt that it was “impossible” to get the trial finalized by Thursday, my doc insisted it would be done. Next thing came her change of attitude as I explained in detail the aggressive nature of my cancer. Unfortunately, like many other ovarian cancer patients and cancer patients in general, when you are out of options…the “options” that appear are not always what they appear to be. Bottom line, there are many “real” doctors and clinics taking advantage of the desperation of patients in my situation. There is no quick fix to cancer or there would be a lot less people dying every day from cancer. There are many integrative approaches to many illnesses including cancer. I am a firm believer in treating the whole body, the whole person. Chemo kills cancer and a lot of good cells too. In other countries, this approach is seen as a normal part of care. In major university hospitals, this is becoming more part of normal care. So, for me I am all about trying things especially things which I know to be either helping or not hurting anything (one can never know what is doing what). My doc is very supportive of all of this too. Now, comes the tricky part…going to a doc in the area who really knows what they are doing and knows about cancer. This is a rare combination. I became a victim to a doc who didn’t know what she was doing. I had asked the numerous questions only to realize later that I had been given the wrong thing. I know my history, know my blood work, know my numbers and it was unfortunate that this doc didn’t read or understand the big picture. So, no real harm done except for what I was supposed to be given was replaced by a combination of vitamin B which if you know this combination…it is a great energy boost, but not when your vit b levels are exceedingly high like mine. I was basically “on crack” vitamin b and could have jogged around the neighborhood at 2am. Lesson learned again…even though I asked the questions, there are some places that really don’t know what they are doing. Now, this place has a “fancy” office which was very deceiving. Basically, you cannot judge an office by its appearance. It was unfortunate that I saw so many desperate faces there who wanted a “cure” or a magic potion or just really wanted to feel better. I know how that feels and it really sucks when you have cancer and your days are filled with potions and lotions only covering up the surface, but not killing the cancer inside. After my “crack” episode, I decided to go to another place later in the week which wasn’t so fancy, but truly cares about the patient. Even at this second place as the nurse pointed out to me, I must be my own advocate and make myself loud and clear on what I will try to help me on my roller coaster ride with my cancer.
Too many lessons learned this past week. I had the usual realization that there are few ovarian cancer activists because so few survive and the ones battling the disease are truly in a constant battle with little free time to get some attention to this darn disease. I know because if I had some spare time, I would yell to get some attention to this horrible disease. I learned at my visit to Cedar Sinai that drug companies don’t want to invest in a drug that won’t make them money long term. They cannot afford the amount of money that is required to even get a drug approved. Ovarian cancer patients are not at the top of the list despite the statistics that 1 in 72 women get ovarian cancer and it is the number one cause of gynecological cancer deaths. Ovarian cancer patients get the left overs. Before approval, drugs for cancer get “tried out” by patients of many cancers…so drug companies can know if they can make more money. Don’t get me wrong, I am all for pharmaceutical companies. It just doesn’t help that I don’t have a “popular” cancer. All my history adds up to a rare situation which I have been told many times at my other 2nd, 3rd, 4th, 5th opinion appointments. In my mind, all the more reason why I keep fighting this fight and don’t look like the typical cancer patient. Yes, I have had the world’s record of number of chemo treatments.  If you look at the functionality of my body, my body is still fighting. This Cedar’s doc was so surprised reading my giant history of chemos as most doctors are and said to me that my “bad” day is a great day for any other cancer patient. I do realize this, but he doesn’t know me and that I hide “things” well or just don’t focus on the many ailments I have. It takes a lot (like inability to walk) to stop me from exiting the house.  My lovely trifecta is so special that it just won’t disappear. Cedars did not have anything for me either because I have had too much chemo or don’t have a giant tumor or don’t want to move to LA. So, we went back to UCLA to pick up the pills for this trial which may or may not help. During this long week and the search to find something new to try, my rock star hubby never gave up cheering me on. Every morning he welcomed me with the, “you’re cured! you look cured!” It gave us something to laugh about this week. In the back of our minds, we know we only have a small window of time to try something before the cancer grows too fast. We do have the weekly chemo in the back pocket, but are trying to focus on these trial pills from UCLA. Alex had a few nights of bad nightmares and we came up with the reading strategy for him to get his mind off of things when he cannot stop his thoughts. Nothing cures a nightmare than reading about Ancient Greece or can put you back to sleep in a flash. Back to my rock star hubby…appointment after appointment, he continues to amaze me with his knowledge and his ability to articulate the cancer doctor language and his love for me. He also keeps me smiling and laughing especially when I am on my pity pot. So, we will go back to UCLA next week, but until then…day by day.
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2 Responses to ““Unlimited, Together we’re unlimited, Together we’ll be the greatest team there’s ever been”…from the play Wicked”

  1. Tanya Says:

    Joanie,

    I am so happy that you have Jim (and I know you are, too). I apologize in advance if this feels obnoxious to you, but I saw a phrase at my church that I liked: “Dear problem, My God is bigger than you.”

    I am always excited when I see you driving in our Aliso radius.

    Sending love to you and the Triestman family-

    Tanya

    Sent from my iPad

  2. Diane Peters Says:

    You and your rock star husband BOTH rock!! Keep up the good fight, you have an army of friends and family beside you all the way! I love you Joanie!

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